2/6/11

Sassy Sunday Spotlight {71 Toes}

I am super excited to tell you about our Spotlight this week! I came across this blog the other day, and instantly fell in love with this family!

When Shawni delivered her fifth child three years ago, a new and very different chapter opened in her family. Little Lucy was born with a sixth toe on one of her chubby little feet, and additional research led to the diagnosis of a very rare genetic syndrome called Bardet-Biedl which, unless remedies and treatments are found, is almost certain to cause blindness, obesity, and other issues for this sweet little girl.

Shawni writes:

I am the mother of five children who all had continual snotty noses until they were three and I still took them out in public. I am the mother who slams doors when I’m mad and can dish out a bone-chilling “evil eye” when I need to whip a child into shape. I have decided the library isn’t even my “thing” (library books can’t seem to get returned at all). And one of my children is not entirely healthy or “normal.”

You see, last year my youngest daughter Lucy (who was two-years-old at the time) was diagnosed with a rare syndrome called Bardet-Biedl. This syndrome, among other things, causes kidney and heart problems, obesity, and most heartbreaking for us, blindness.

Even though in our hearts my husband and I knew full-well the diagnosis was coming (Lucy had always been delayed and we had done enough research to know this syndrome fit…like a glove), in the back of our minds I think we dearly hoped that maybe, just maybe, it would all turn out to be a bad dream. And we’d wake up and our life would go on as planned. We would be a “normal” family. Is that so much to ask?

But it wasn’t a dream. It was real. And in many regards it slapped us in the face. It is interesting to look back and reflect on what has happened in a year. Countless doctors have been visited (and small pieces of my mind have been handed out liberally as needed). We have gone from worrying endlessly about blindness to obesity to heart problems to kidney issues and back again…around and around in one big, never-ending circle.

But you know what else? Our little family has learned and grown in ways we never thought possible. I have watched my four older children become the best live-in therapists there ever could be. We have fallen more deeply in love with each other as we have cried together, laughed until we cried again, and worried.

As we work to fight all fronts of this syndrome, there are some things we can’t change. But one thing we feel we can do is stand up and fight against blindness. You see, most children with this syndrome lose their vision between the ages of eight and fifteen. But scientific evidence has given us hope that there may be a cure for Lucy's type of blindness within the next few years. Because of that time line we feel as if we're on a race against time to help fund the research to help Lucy keep her vision.

Simultaneously, as we found out about this syndrome my mother and I had just published a book about motherhood called A Mother's Book of Secrets. We had happened to choose a picture of Lucy for the cover of the book before we had any idea about what would hit us with this syndrome. In light of our new diagnosis we decided to donate all of our royalties from this book to help fight blindness.

The money we can raise through this may only be a drop in the bucket to help, but sometimes as mothers we just need to stand up and fight for whatever our childrens' needs may be.

So, back to my motherhood vision from my youth: What I’ve realized is that I like that lady I see in the mirror much more than that sterile one I dreamed of becoming. Because she is real. She takes her children out and loves them even more because they’re not perfect. Their mistakes and “issues” fold into her heart and make her one with them as they work things out together. She can apologize for her many mistakes and her children know that although she strives toward perfection, she’s far, far from it. And that’s ok with them.

And that healthy, normal kid thing? Well, that lady I see in the mirror has realized that this “different” child of hers has already wrapped herself around her finger and taught her more in one year than she could have ever dreamed of learning without her. That daughter with the syndrome has taught her a whole new realm of strength, endurance and pure love.

In my “future motherhood outline” I never planned on being the one to help educate specialists about a syndrome they have never heard of before and fight for what my daughter needs with all my might. I never dreamed of being the mom who tries to encourage strangers to go on “vision walks” or to have to teach a child to walk with a cane. But here I am. And although last year I never thought I would say this, I’m so thankful that I’m not that Mom my younger self hoped I would be. I’d bet that very few of us mothers are.

Someone wise once explained that you can’t direct the winds; but you can adjust the sails. May we all strive to embrace that wind that inevitably fills our lives and learn how to guide our sails not toward our dream-like storybook best, but our own real best.

Shawni and her mother, Linda, have co-written a bookabout "Keys to making motherhood memorable, meaningful, and magnificent!" Looking back with the perspective of a lifetime of mothering, Linda is uniquely positioned to share the insights she has gained, with a gentle reminder that those seemingly endless trenches of motherhood will be gone before you know it. Shawni, with her little ones still at home, speaks to all young mothers, offering encouragement and support in a friendly, conversational style. She reminds us that kids are like puzzles — you just have to figure them out! This book is filled with entertaining stories of the ups and downs all mothers experience, accompanied by enchanting full-color photographic portraits... A Mother’s Book of Secrets won’t be a secret for long.

YEP, I can't wait to dive into it!! You can purchase the book HERE, or it is also available at Barnes & Noble and Amazon. Shawni and her family donate all royalties for the book to research for Lucy’s issues.

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And if you didn't think that Shawni was busy enough, she is also a professional photographer! This is one amazing woman and MOM!Her blog is very entertaining and full of inspiration! I have loved getting to know her and her sweet family... especially Lucy!

You are SO sweet to write such nice things! I appreciate it so much! Thanks for helping to spread the word and sharing the love for Lucy. Now I better go check out the rest of your blog...it looks wonderful.Much love, Shawni